Life, Autism, Disability, and More

The meltdown at the thrift store…

School started on Monday!

Simon has been happy to be back on a schedule, and every day, he comes home and tells me that he’s going back to school, and I remind him that he won’t go back until the next morning.

Monday was good.

Tuesday was good.

Wednesday. Well. Wednesday was.

He got home, and everything seemed to be running smoothly, but then for no reason I could tell, something changed, and he began getting upset. He wanted dad home. He wanted dad home now, and nothing I could say would make it better.

Okay, I thought. Let’s try to go for distraction. (Seriously, sometimes I think that distraction is my best friend, although when it comes to ADHD, it’s my worst enemy.)

“Do you want to go run errands?” I asked him.

Errands? Shopping?

Oh, yeah, he was all in.

We went to the thrift store across the way.

And he was not all in. Not even close to partway in. He didn’t even have a toe dipped in there.

Instead, as we walked into the store, he began demanding dad. Loudly. Repeatedly.

He got more upset the longer we were there. I tried to get him to hold off, asked him if he still wanted to go anywhere else, told him that dad would be home when we got home. No dice.

He screamed more. He cried, tears streaming down his face.

Time to leave.

We got to the counter.

We had to wait.

Simon really, really, really did not want to wait.

He escalated in decibels, and he added in this little shrieking thing he does.

Now, I’m going to go back a bit.

When we were on vacation, I managed to pick up a cold. It didn’t really hit until the last day, but since it has hit, I’ve been congested and coughing, and I’ve had a sinus headache every day. It normally starts out hurting, and by about lunch time, it has gotten worse, and by dinner time, it’s turned into a migraine. What I’m trying to say is that the noise was bad for the people in the store, but I’m going to say it was slightly worse for me. I couldn’t go to another area of the store and ignore it, and I couldn’t stop it.

I tried to calm him down, like I had been doing. I gave him pressure and hugs, I rubbed his back, and I told him he was doing good at calming down (even though he wasn’t – but for some reason, telling him that he is doing it seems to make him do it sometimes).

He began slamming his hands down on the counter, shrieking.

I pulled his hands back, told him not to do it, and listened to him getting louder.

I considered leaving, but I had two things I really wanted, and I was seconds away from getting rung up.

No one said anything to me, but when I looked around, I saw the stares. Shockingly, people were not enjoying his meltdown. I had to balance what I wanted versus if I thought I was driving other people insane. It was a public place, I reasoned. And if I can’t get him used to going to public places and stopping a meltdown, then what will happen when I *have* to go somewhere and he’s having a meltdown?

I was going to try to wait it out.

I managed to pay with him only breaking free once more from a hug to slam his hands down on the counter. Then we were outta there.

I sent out a quick tweet, which showed up on my FB page, and I got a “sorry” and a frowny face.

I wanted to explain my tweet. And any of my other tweets when I say Simon is having a bad day or a meltdown or whatever else is going on that he (and I) aren’t enjoying.

I don’t mean the tweets to get replies of sympathy. I don’t want people to apologize for Simon – and me – having a bad day.

I’m really just trying to get out there and say, “Hey, this happens. Next time you’re at the store, don’t stare, even if you want to. Next time you’re at the store, realize that you aren’t enjoying the yelling, but neither is the kid – or adult – doing it. Neither is/are the parent/parents who are trying to help the person having the meltdown. Next time you’re at the store, have some empathy, not just sympathy. Next time you’re at the store, be aware why the other person is there, and why you might have to put up with something you find unpleasant. And, next time you’re at the store, if you hear/see this happening, why not run over to the person with a Starbucks gift card…”

Vacation is interesting…

simon standing on the beachIn a good way, mostly.

But there’s also the unexpected (and expected) things that happen.

Expected:

  • Having to repeatedly explain to Simon that licking the ocean – and the sand – is not good. (Is it bad that is the first thing on the “expected” list?)
  • Telling Simon that no, we still had two days to go at the beach, but then, I promised, we could go home. Then telling him that, no, we still had one whole day to go. But, I promise, we will go home tomorrow.
  • Every day, we had to go somewhere, regardless of where, to get Simon “reset.”
  • When we were putting something on the big TV in the living room, I asked Simon if he wanted to watch Elf. He’d already said “no” to almost everything else. Elf always gets a yes. I have taught him well.
  • Even though he had a box full of black and white crayons (from Dick Blick) and a huge box of 64 crayons, he still wanted to buy a box of 16 crayons at the super-expensive shop on island.
  • Many, many fine grilled cheese sandwiches (and chicken fries) were eaten during the trip.

 

Unexpected:

  • He helped pick/pack his own toys this year. He couldn’t wait until it was Friday to do it. We had to keep putting him off.
  • There’s still tar in the sand/water, and when it gets on you, it is awful hard to get off. (Not necessarily just about Simon, but he was one of the lucky ones to get the tar on him…)
  • The transition from the house we’d been renting for the past nine years to a totally new house went off with almost no hitches!
  • Simon actually colored in a velvet/paper car and put it together with glue!
  • Simon tried an apple fritter! A whole bite! Of course, then he said no when we offered him more.
  • While Simon needed to go somewhere to get “reset,” some days, the beach did the job. In the past, it always happened that he needed to go shopping somewhere.
  • Simon requested to go to a Target. We had to find one down here because we normally just go to Wal-Mart.
  • He didn’t immediately ask to go home once we got here, and when Patrick foolishly said that Simon could have more juice when we got home, Simon corrected him, saying, “beach house.”
  • After day one, he immediately became uninterested in his iPad. He’s spent most of the trip coloring, watching DVDs, getting hugs, playing in the sand and in the water, and lying around on the floor.
  • Libraries are all about getting books, but anytime we go anywhere else, Simon rejects all book options and doesn’t want to take them home. When we went to the thrift store here, he picked out – and wanted to bring home – a Thomas the Tank Engine story collection.
  • The beach is a great motivator – which we knew already – but it really and truly works when it comes to getting him to use sentences. Nothing like being forced to say a full sentence in order to get into the ocean. The words come out pretty fast for that.
  • The slinky lasted the entire trip before being destroyed on the final day.

 

The Escalator Escapade

For anyone who followed my day of live-tweeting Simon having a meltdown because of summer vacation and Dad having the nerve to go to his job, you have probably guessed that we have had some interesting days.

141114-simonBut nothing compares to…

The Escalator of Doom!!!

Simon loves going to the mall. Who doesn’t, right? I blame my mall rat-ness on growing up in New Jersey. I could happily go to the mall almost every day. There’s no need to buy anything. It’s about walking around, people watching, drinking coffee, whatever else is happening. Luckily, Simon is the same way.

Since he’d been having a hard week, I asked him if he wanted to go to the mall.

Of course he did.

We got there, and after walking around for a bit, I told him that he could tell me if he wanted to go into any stores.

He didn’t.

But as we walked close to a Journey’s Kids, he leaned in a bit, watching what was on their monitors. I asked if he wanted to go in.

“No.”

Okay.

We kept walking. He started leaning towards Dillard’s.

“Do you want to go into Dillard’s?”

“Yes.”

I stopped. For real? Dillard’s?

“You want to go into Dillard’s?”

“Yes.”

He was pulling my hand towards the overpriced department store already.

“What do you want in Dillard’s?”

“Escalators.” He gave me a look that told me just how stupid I was to have to ask that question.

“Ooooh-kay.”

We went in.

Found the escalators.

He gripped my hand, gave me his notebook (Blue’s Clues – Steve’s notebook) to hold for safekeeping, and we rode up the first one to the second floor.

“Do you want to go up again?”

Once again, that tight grip on my hand, and we were up on the third floor.

“Okay, do you want to walk around or go down?”

“Down.”

Easy enough, right? Right?

Oh my god, you don’t know how wrong.

I took his hand and his notebook, and we walked around the circle of escalators to go down.

Another crushing hand squeeze on my right hand, and I was trying to hold notebook in one hand and hang onto the railing with the left.

I started to step out onto the escalator.

He didn’t.

He kept his grip and stood firm at the top.

One of my legs – the one on the step – kept moving further away. My left hand and arm kept moving away. The right side of my body, though, was trapped, held firm.

Before I split and became one of those horrible escalator accidents that you always seem to read about, I pulled myself back up to the top.

“Okay,” I told Simon. “You have to step off with me. Okay? It’s not safe otherwise. Ready?”

“Yes.”

I tried again.

He stood there again.

I almost split in two trying to not fall down and snapped myself back to the top before I dragged him down with me.

“Let’s take the elevator down.”

“Okay.”

We took the elevator down to the first floor.

“Now, do you want to keep walking? Or ride the escalator again?”

Foolish question.

“Escalator.”

Up we went. Up we went.

Third floor.

“Should we take the elevator down?”

“No.”

By now, my brain had moved onto the oh-my-god, we’re-gonna-die phase of the escalator riding. I could only think about the video that had been circulating the internet, the woman who got sucked into the escalator and killed.

But I’m a mom. I could do this. Maybe.

“Okay, we can try this. But you *have to* step off with me, okay? It’s not safe otherwise. You *have to* step when I do, okay?”

“Okay.”

He took my hand. I held his notebook.

“One, two, three,” I counted.

I stepped.

He let go of my hand.

I went down the escalator, and he stayed at the top, watching me.

Panic moment.

Was he going to try to follow me, trip and fall, and suddenly I’d be on the news as the mother who watched her child die in a freak escalator accident?

Was he going to freak out because I’d left him at the top?

Should I run back up the escalator?

Yeah, that wouldn’t work.

Instead, I told him to wait for me and watched him carefully as I ran down the escalator, ran around the corner, and came back up to him.

“We need to take the elevator down,” I told him.

“Escalator,” he demanded.

“You *have to* step off with me,” I said. “Do you understand?”

“Yes.”

“We’re going to step on at three, okay?”

“Yes.”

He grabbed my hand again. We braced ourselves.

“One…two…three…”

And we did it!

We did it!

Down to the second level.

“Okay, we’re going to do it the same way. On three.”

He nodded.

“One…two…three…”

We made it all the way down!

After that, he agreed to be done with the escalator, and I went and bought him a cookie at the Nestle stand.

We had survived the escalators of doom.

(Until yesterday, when we went and rode the escalators at Sears…but that’s a different story…)

Thoughts on being at a park in Texas in August

slideWhy is there summer vacation during the summer?

Simon hates summer vacation.

It’s boiling hot out here.

I swear I saw a bird’s egg boil like the eggs on the counter in Ghostbusters.

Is that a red ant biting my toe?

Damn, it’s hot out here.

At least there’s some shade to sit in.

Wow, it’s sweltering in the shade.

Did I mention it’s fucking hot out here?

Did I bring enough juice and water?

Am I bad mother for sitting here writing while Simon tromps around the playground?

Is that pollen making me sneeze or do I have a cold?

Jesus Christ, it’s like an oven out here.

At least the playground has shade over it so it’s not too bad.

Note to self: headache + hot as Hades in park = worse headache

Where’s iced coffee when I need it?

If I throw away these tissues, will a swarm of wasps come out of the trash bin and chase me?

Nope, it’s too hot for the wasps, too.

The wasps are smarter than me; they’re hiding from the heat.

What are all those weird cocoons on the tree next to me?

Holy hell, they go all the way up and over my head!

What’s going to come out of them?

Maybe I should move.

Oh my god!

What just fell on my paper?

Wait, it was just a leaf.

Wow, he’s climbing up the side of one of the playgrounds! He’s never done that before.

climbingSeriously, it feels like triple digits out here.

No wonder we’re the only ones here.

Have we been here long enough for me to call it a morning without being a bad mother?

Have we been here too long, and I’m already a bad mother?

Why did I think coming to a park in Texas in August was a good idea?

Why is there summer vacation?

Cicadas! Shut up! You’re not helping my headache!

What? Other people are showing up?

Do they not realize the error of their ways?

Did I mention it’s hot out here?

swingWhy is it that Simon’s perfectly happy to swing by himself unless I go over to see him, and then he wants to be pushed?

Okay, he’s turning red.

Time to go home.

Begin my list of the day of things I’m grateful for: air conditioning in the Jeep

What did they teach him in ESY?

subliminal_animationFor the uninitiated into the secret language of special needs education, ESY is Extended School Year. So far, Simon has qualified for it every year.

To qualify, your child must show significant regression linked to long breaks, and there must be significant recoupment. Of course, this means some school districts make up data/rules, but we’re in a good system that actually uses real data and rules. But I digress…

The thing is, Simon *loves* going to ESY. He loves school anyway, so it’s not surprising that he’d like ESY since there are less kids, and he gets a lot of attention. On top of that, he still gets to ride the bus twice a day. It’s like heaven for him.

The only problem we have with ESY is it often has a lot less communication between the teachers/parents. Part of the issue is because ESY has shortened days, and it’s only four days a week. It often gets scheduled rather last minute because of the need for current data, and that can also make it more difficult to know who the teacher will be ahead of time. Add those factors the fact the district itself is on reduced hours and there isn’t always too much staff around in the school itself to answer phones.

Now, I say all that, but I do know how to contact people, and it’s not like we never hear from anyone. I’m just saying there’s less communication.

Which is why I’m wondering what, exactly, they have been teaching Simon over the summer.

I ask that because this morning I woke up to Simon sitting on the bed next to me, whispering, “We’re going to HEB,” over and over again. Quiet. Deliberate. Convincing.

I think they may have been teaching him how to use subliminal messages.

Oh, and do you need anything from the store? Because we’re heading out to HEB in a few minutes…

(Oh, and thanks to http://gifmaker.me/ for making the animated gif process quick and easy!)

Typical

help wantedI really hate to post what I consider downer blogs, but sometimes that’s where I am.

A quick history: a little over a year ago, I quit my job to focus on writing and going to school. I had been teaching college English online, but I was discovering that my work weeks were lasting an easy 50 to 60 hours, and it was just too much.

The problem with that lack of job thing is that we’re now living on a single income, which can really be hard and can really suck sometimes. Every once in a while, I decide that I should go back out and get a job. But there’s only one problem: I really can’t.

All this really came to a head for me because a friend with three school-age children decided to apply for a job on a whim. She’d been looking for teaching work, but she found something else that sounded interesting. She got the job. She starts Monday.

Meanwhile, I can’t get a whim and decide to start a job. Because while Simon has school and even ESY (extended school year for those not in the know), he still has vacations and days off and half days and sick days. A regular job doesn’t work.

We can’t put Simon in any sort of daycare – he’s too old at 13. And he doesn’t deal well with sitters or anyone else taking care of him at the house. At this point, the only times we can go out are when he’s in school or when he’s asleep. And when he’s asleep, our babysitter has the easier job in the world because, well, he’s asleep.

We could probably find someone who could handle him and take care of him properly, but to do that, we’d probably be paying out at least as much as I could make at a job. When you factor in taxes and transportation, we may even lose money on the deal.

Honestly, sometimes I’m just not sure when – or if – I’ll ever be able to hold a “normal” job.

Which brings me back to the question of normal. Perhaps I should say typical?

Either way, it can make me feel frustrated and trapped, and jealous of people who don’t have the same restrictions. And then I feel guilty for feeling frustrated and trapped and jealous.

Now, I don’t want this to be a total downer blog. It’s not like I spend all my time thinking about this, and it’s not like I’m super down in the dumps about it. But it’s something that I think that parents of neurotypical children don’t have to think about it. They have their own worries, I admit, but different ones.

So what’s the whole point of this blog? I guess it probably comes back to my usual point: don’t judge. I need to stop judging myself for not being able to get a typical job. I need to stop judging other people who are able to get a typical job. I need to stop worrying about the future, stop judging the current and just go with the flow.

From zero to six in ten years…

Augen (eyes)

Language number five…

One of the first things the pediatrician pointed to was Simon’s lack of speech. He was a year old, and while he’d babble, for the most part he just pointed at things he wanted. He didn’t say Mama or Papa. She asked if we would mind if he got examined by Early Childhood Intervention when he was 15 months old if things hadn’t changed. We agreed.

He didn’t talk by the time he was 15 months old.

He also didn’t talk by the time he was two years old.

Eventually, through the use of videos, he learned American Sign Language (ASL).

Then he began speaking, also through the use of videos. His first word, which he said when he was almost three years old, was “bear,” and he said it after watching a Baby Bumblebee video.

For a long time, we worked with sign language and English. He slowly picked it up and began expanding what he said.

Years passed.

He taught himself to read.

He learned how to write.

Then, earlier this month, not long after he turned 13, he discovered the language options on those old Baby Bumblebee DVDs. He’d never stopped watching the videos. I guess he still liked the word repetition they feature.

We realized that he was watching the Spanish option, repeating all the words. We asked him to tell us things in Spanish, and he did. He knew dog was perro and cat was gato.

Next up was French. I guess he thought that he’d already mastered the Spanish parts of the DVD.

Of course, when we went out to lunch with a friend, I tried to get him to show off. I asked him how to say dog in French. He looked at me like I was an idiot and said, “poodle.”

After a lot of laughing, I asked him for it again and he said, “chien.” I asked him for it in Spanish, and he said, “perro.”

So, yeah, he took to those languages.

Then, not even a week ago, he began learning German. His favorite word was “augen” (eyes).

A few days ago, he swapped to the final language option: Japanese. (Dog is inu, by the way.)

If you’d asked me ten years ago what I thought Simon’s “special skill” would have been, I might have guessed his art work. He’s awesome when he draws. I never would have guessed that he’d be into languages. I’m not sure that he’ll stick with them, but he obviously has quite a talent there, and maybe this will be where he goes in life. It goes to show you that ten years can be quite a long time and quite a lot can change.


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